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New book recounts tragedy to hemophiliacs from HIV-tainted blood in the early 1980s and their eventual empowerment

For thousands of years, boys known as "bleeders" faced an early, painful death from hemophilia. The 20th century has seen many advances in hemophilia treatment. Scientific breakthroughs in coagulation research in the 1950s led to the development of freeze-dried pooled plasma products. Major treatment improvements occurred beginning in the 1970s, following passage of legislation that created a nationwide network of federally funded hemophilia treatment centers. By the early 1980s, the "miracle treatment" of freeze-dried pooled plasma blood products, which helped blood clotting and abated uncontrolled bleeding, enabled men with hemophilia to have full, normal lives. However, infiltration of the virus into the blood donor supply during that time resulted in over half of the hemophilia community becoming infected with the virus that causes AIDS.

But rather than collapsing, this community refocused its priorities, extended its reach, and helped shape blood safety policies to prevent further tragedy, according to a new book by Susan Resnik, Dr.P.H., of the University of California, San Diego, Medical School. In the book, Blood Saga: The Emergence and Empowerment of the U.S. Hemophilia Community, 1948-1998, Dr. Resnik includes the stories of many players: men with hemophilia and their families, medical personnel, clinical researchers, and the author herself, who was Educational Director of the National Hemophilia Foundation in the early 1980s.

Through narratives and use of oral histories, Dr. Resnik tells the story of hemophiliacs' hopes and dashed dreams from the perspectives of parents, wives, nurses, doctors, government agency directors, health care providers, and many others. Gene insertion therapy now holds the promise of a cure for hemophilia in the near future. Yet scientific breakthroughs inevitably become intertwined with the industry and academic medical centers that govern the national health care system. And in that system, costs and safety are sometimes contending issues, notes Dr. Resnik, whose work was supported by the Agency for Health Care Policy and Research (HS06596).

See Blood Saga: The Emergence and Empowerment of the U.S. Hemophilia Community, 1948-1998, by Dr. Resnik; Ewing, NJ: University of California Press, 294 pp., fall 1999. Available for purchase from California-Princeton Fulfillment Services, 1445 Lower Ferry Road, Ewing, NJ 08618; phone, (609) 883-1759; fax, 800-999-1958; $29.95 clothbound, plus $3.75 shipping.

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